WFH NETWORK

The Africa Summit Declaration on Hemophilia and Other Inherited Bleeding Disorders

The World Federation of Hemophilia (WFH) Africa Summit on Hemophilia and Other Inherited Bleeding Disorders was held in Dakar, Senegal from November 28 to 29, 2017. The event brought together a number of key stakeholders in the community, including patients, physicians, government officials, and national member association (NMO) members. The Summit covered many topics, but chief among them was the current state of bleeding disorders community in Africa. The stakeholders came together to collaboratively discuss what could be done to improve care in Africa for people in the community. The following declaration is the official set of recommendations that came out of the WFH Africa Summit on Hemophilia and Other Inherited Bleedings Disorders.

We, the participants at the World Federation of Hemophilia (WFH) Africa Summit on Hemophilia and Other Inherited Bleeding Disorders, meeting from November 28 to 29, 2017 in Dakar, Senegal:

  • Are concerned that: Too many people with inherited bleeding disorders in Africa have not been diagnosed and are not receiving treatment.
  • Recognize that: Many countries in Africa have limited resources for health care delivery including care of people with hemophilia and other inherited bleeding disorders.
  • Affirm that: We are committed to an Africa in which people with hemophilia and other inherited bleeding disorders are free from pain, suffering and bleeding episodes.
  • Emphasize that: Governments, national member organizations (NMOs) and healthcare providers, individually and in partnership, have an important role to play together as national partners in improving awareness and promoting access to care and treatment.

We therefore declare that the governments, NMOs, and health providers should undertake actions in the following four key priority areas:

Action Statement 1:  Recognize hemophilia and other inherited bleeding disorders in the governments’ national health care delivery policies and programs to improve care and management, and ensure that healthcare providers have the skills and capacity to deliver quality care and treatment.

Action Statement 2Implement outreach programs, responding to the individual country needs, to identify undiagnosed persons with hemophilia and other inherited bleeding disorders.

 Action Statement 3Endorse the importance of developing a harmonized approach to lab diagnosis for patients with hemophilia and other inherited bleeding disorders, and undertake to work collaboratively to develop guidelines for accurate lab diagnosis in Africa including the availability of equipment and materials to facilitate the diagnosis.

Action Statement 4: Treat people with hemophilia and other inherited bleeding disorders; recognizing that the lack of safe treatment is not an option and that improved access to treatment is an imperative to save lives and improve the quality of life of the patients.

To ensure that these undertakings are successful, we hereby recommend that the governments, the WFH and the NMOs adopt this Africa Summit Declaration and join in collaborative working partnerships to implement these initiatives.